Collection of daily patient reported outcomes is feasible and demonstrates differential patient experience in chronic kidney disease

Introduction: Patient reported outcomes (PROs) are a critical metric documenting the impact of disease and treatment from the patient's perspective. A variety of generic and disease specific PRO measures (PROMs) are used in chronic kidney disease (CKD) but studies are primarily cross-sectional. None of the available PROMs are designed for frequent iterative application.

Methods: An online PROM for daily use in dialysis and CKD 4/5 patients was developed. The custom website utilised visual analogue scales to capture 6 PROs (general well being (GWB), pain, sleep, breathing, energy, and appetite). Outcomes of interest were uptake, response rates, intermodality variation, and change in PRO corresponding to predefined events.

Findings: Forty-three patients submitted at least once and 34 submitted beyond 30 days. Median follow-up was 247 days, 64% male, age 62 ± 12 years. In individuals submitting for >30 days, dialysis patients had significantly worse median scores compared to CKD for sleep (47[32-80], 97[76-99], P = 0.003), appetite (66[50-96], 97[88-100], P = 0.008), energy (47[40-89], 84[67-96], P = 0.031), and GWB (63[49-94], 93[71-98], P = 0.026). Patients demonstrated a variety of stable bandwidths of response, deviations from this were associated with specific events e.g., acute admission, vascular procedures, disturbed fluid status, and dialysis start.

Discussion: We successfully introduced an online, patient acceptable, iterative PROM that discriminates symptom burden, cross-sectionally, and longitudinally. Further work will prospectively examine the predictive power of changes in PRO and more rigorously investigate the potential use of these methods to optimise patient care.